A telephone-based education and support intervention for Rural Breast Cancer Survivors: a randomized controlled trial comparing two implementation strategies in rural Florida.

PURPOSE: To compare two implementation telephone-based strategies of an evidence-based educational and support intervention to Rural Breast Cancer Survivors (RBCS) in which education was delivered early or after the support component. METHODS: Florida RBCS participated in a 12-month randomized clinical trial (RCT) with two arms: Early Education and Support (EE-S) and Support and Delayed Education (S-DE). Arms differed in the timing of 6 support and 3 education sessions. Main outcome was quality of life (QOL, SF-36 physical and mental composite scores [PCS, MCS]). Secondary outcomes were depressive symptoms (Centers for Epidemiologic Studies Depression Scale, CES-D), mood (Profile of Mood States, POMS), and social support (Medical Outcomes Study Social Support Survey, MOS-SSS). Outcomes were analyzed longitudinally using repeated measures models fitted with linear mixed methods. RESULTS: Of 432 RBCS (mean 25.6 months from diagnosis), about 48% were 65+, 73% married/partnered, and 28% with ≤high school education. There were no differences between EE-S and S-DE in demographics or outcomes at baseline (mean (standard deviation): SF-36 PCS, 44.88 (10.6) vs. 45.08 (10.6); MCS, 49.45 (11.1) vs. 48.1 (11.9); CES-D, 10.11 (9.8) vs. 10.86 (10.5); POMS-SF, 23.95 (38.6) vs. 26.35 (38.8); MOS-SSS, 79.2 (21.2) vs. 78.66 (21.2)) or over time. One exception was slightly worse mean scores at month 9 in MCS (Cohen's d, - 0.22; 95% CI, - 0.38, - 0.06) and POMS (Cohen's d, 0.23; 95% CI, 0.07, 0.39) for EE-S vs. S-DE. CONCLUSIONS: The implementation strategies were equivalent. IMPLICATIONS FOR CANCER SURVIVORS: Enhancing support may be considered before delivering not-in-person interventions to RBCS.

Effects of a speed of processing training intervention on self-reported health outcomes in breast cancer survivors.

Purpose: Cognitive deficits are a concern for breast cancer survivors, as these effects are prevalent and impact daily functioning and quality of life (QoL). The purpose of this study was to examine the effects of a speed of processing (SOP) training intervention on secondary, self-reported health outcomes in this population. Methods: Sixty middle-aged and older adult women breast cancer survivors completed baseline assessments and were randomized to either a no-contact control group or an SOP training group, who completed 10 hrs of computerized SOP training online at home. Both conditions completed self-report surveys of sleep, QoL, cognitive difficulties, and depressive symptoms at six weeks and six months post study entry. Results: There were no significant effects of the SOP training on self-reported health outcomes. Conclusion: Future studies examining the effect of cognitive training on self-reported health outcomes are warranted that include individuals with baseline impairment in such indices in order to better determine efficacy, and longer follow-up time points may aid in examining the protective effects of this intervention in those without baseline impairment.

Telehealth intervention for Latina breast cancer survivors: A pilot.

AIM: This study was a pilot test of the Latina Breast Cancer Survivorship Intervention, a survivorship self-management intervention delivered via telephone. MATERIALS AND METHODS: This study used a wait-list control design with random assignment to either (1) support and early education or (2) support and delayed education. Latina breast cancer survivors were recruited through the Florida Cancer Data System Registry. Latinas with stage I-III breast cancer who completed primary cancer treatment 3 years prior to study enrollment were eligible. The Latina Breast Cancer Survivorship Intervention consisted of three education sessions delivered weekly via telephone and six telephone support calls, both delivered by a native Spanish speaker. Primary outcome variables included physical well-being, emotional well-being, fatigue, pain, and depressive symptoms. Data collection occurred at baseline, 3 months, and 6 months. RESULTS: In total, 40 Latina breast cancer survivors who were middle-aged to older, married, with health insurance, and Spanish as preferred language enrolled in the Latina Breast Cancer Survivorship Intervention. Data were analyzed using mean change scores. Overall, physical and emotional well-being remained similar over time with well-being scores poorer compared with the general population. Pain levels improved over 6 months and showed a high effect size. Fatigue scores improved at 3 months and showed a moderate effect size. Depressive symptoms remained elevated but were not clinically significant. CONCLUSION: Telephone-based Latina Breast Cancer Survivorship Intervention reached Latina breast cancer survivors for survivorship education and support. Self-management of pain and fatigue showed improvement over time.

Speed of processing training in middle-aged and older breast cancer survivors (SOAR): results of a randomized controlled pilot.

PURPOSE: Cognitive changes are common among breast cancer survivors. There is limited evidence to guide management of cognitive changes. This randomized controlled pilot evaluated the preliminary efficacy of a speed of processing (SOP) training among middle-aged and older breast cancer survivors. METHODS: Sixty breast cancer survivors  with self-reported cognitive changes were recruited to the SOAR study. Participants were randomized to either a home-based SOP training (n = 30) or no-contact control group (n = 30). Primary outcomes were SOP (Useful Field of View Test®), and executive function (NIH Toolbox Cognition Battery). Neuropsychological assessments were completed at baseline, 6 weeks, and 6 months post study entry. Data were analyzed using repeated measures t tests, analysis of covariance, and sensitivity analyses. RESULTS: SOP training resulted in improvement in objective measures of SOP and executive function. Immediate (6 week) posttest and 6-month follow-up demonstrated large SOP training effects over time. Large representation of African American women (51.2%) and 96% retention in the SOAR study add to study strengths. CONCLUSION: Home-based SOP training shows promise for remediating cognitive changes following breast cancer treatment, particularly improved SOP, and executive function.

Out-of-pocket costs and burden among rural breast cancer survivors.

Little is known about out-of-pocket (OOP) costs incurred for medical and health needs by rural breast cancer survivors and what factors may be associated with higher OOP costs and the associated economic burden. Data were examined for 432 survivors participating in the Rural Breast Cancer Survivor Intervention trial. OOP costs were collected using the Work and Finances Inventory survey at baseline and four assessments every 3 months. Mean and median OOP costs and burden (percent of monthly income spent on OOP costs) were reported and factors associated with OOP costs and burden identified with generalized linear models fitted with over-dispersed gamma distributions and logarithmic links (OOP costs) and with beta distributions with logit link (OOP burden). OOP costs per month since the end of treatment were on average $232.7 (median $95.6), declined at the next assessment point to $186.5 (median $89.1), and thereafter remained at that level. Mean OOP burden was 9% at baseline and between 7% and 8% at the next assessments. Factors suggestive of contributing to higher OOP costs and OOP burden were the following: younger age, lower income, time in survivorship from diagnosis, and use of supportive services. OOP costs burden rural breast cancer survivors, particularly those who are younger and low income. Research should investigate the impact of OOP costs and interventions to reduce economic burden.

Variation in resources needed to implement psychosocial support interventions for rural breast cancer survivors.

PURPOSE: Understanding how resources are used provides guidance to disseminating effective interventions. Here, we report data on implementation resources needed for the Rural Breast Cancer Survivors (RBCS) study that tested a telephone-delivered psychoeducational education and support intervention to survivors in rural Florida. Intervention resources included interventionists' time on one intake assessment (IA) call, three education calls (ED), one follow-up education call (FUE), six support (SUP) calls, and documentation time per survivor. METHODS: Interventionists logged start and end times of each type of call. Average interventionist time in minutes was calculated by call type. Associations between interventionists' time and participants' characteristics including age, race/ethnicity, time since treatment, cancer treatment, depressive symptoms, education, income, employment, and support, was assessed using linear mixed models with repeated measures. RESULTS: Among 328 survivors, IA calls lasted 66.9 min (SD 21.7); ED lasted 50.6 (SD 16.7), 48.1 (SD 15.9), and 39.6 (SD 14.8); FUE lasted 24.7 (SD 14.8); and SUP 42.8 (SD 29.6) min. Documentation time was 18.4 min for IA, 23-27 for ED, 12.3 for FUE, and 23.0 for SUP. CONCLUSION: Interventionists spent significantly more time with participants with depressive symptoms, who already used other support, and who received SUP calls before the ED vs. after. There were no significant differences by time since or type of cancer treatment, or other personal characteristics. IMPLICATIONS FOR CANCER SURVIVORS: Resources vary by survivor characteristics. Careful consideration of mental health status or support available is warranted for planning implementation and dissemination of effective survivorship interventions on a broad scale.

Patient-centered outcome evaluation of the Rural Breast Cancer Survivors Intervention.

PURPOSE: Patient-centered evaluation is a critical but often overlooked component of intervention research. The Rural Breast Cancer Survivors (RBCS) Intervention is a survivorship education and support intervention designed for rural breast cancer survivors. Here, we describe evaluation of the RBCS Intervention from the participants' experience. METHODS: Three hundred sixty-four breast cancer survivors participating in the RBCS Intervention were asked to complete the RBCS Evaluation Survey that consisted of 6 quantitative statements and 12 qualitative questions via mail. RESULTS: Two hundred twenty-one participants (61 %) returned the RBCS Evaluation Survey. All 221 completed the qualitative component, and 91 (25 %) completed the quantitative. Overall, participants indicated that the education materials were easy to understand and addressed their quality of life concerns. Majority (94 %) indicated that the survivorship information was helpful in making health decisions and communicating concerns to family (87 % strongly agree/agree) and oncology team (88 % strongly agree/agree). Only 66 % indicated that the survivorship educational materials were provided at an appropriate time after completion of primary breast cancer treatment. Qualitative data suggested that participants had positive perceptions and experiences and found the RBCS Intervention helpful. One-on-one interaction with the intervention nurses was the single most highly valued aspect. CONCLUSION: Overall, the RBCS Intervention was helpful. Education materials addressed quality of life concerns. Breast cancer survivors developed skills in communicating with their family and oncology team. Intervention nurses were identified as the most valuable aspect of the program. Suggestions include earlier timing of survivorship education and support, and adaptation using social media access to serve other rural survivors. RELEVANCE: Patient-centered evaluations, using both quantitative and qualitative data, provide enriched understanding of evidence-based survivorship interventions and should be considered a standard for future work.

Multimorbidity and breast cancer.

OBJECTIVES: To examine the significance of multimorbidity in breast cancer survivors, to explore multimorbidity in treatment decisions, and survivorship, and to consider multimorbidity assessment in clinical practice. DATA SOURCES: Literature review; clinical practice guidelines. CONCLUSION: Multimorbidity influences treatment decisions. Breast cancer survivors report greater multimorbidity compared with other cancer survivors. Multimorbidity increases with age; there may be racial and ethnic differences. Multimorbidity is associated with symptom burden, functional decline, low adherence to surveillance, and early retirement. IMPLICATIONS FOR NURSING PRACTICE: Clinical practice guidelines do not refer to multimorbidity and patient outcomes. Comprehensive geriatric assessment combined with survivorship care plan may be considered.

Co-morbidity and predictors of health status in older rural breast cancer survivors.

PURPOSE: More than 66% of the 200,000 newly diagnosed annual breast cancers in the US occurs in women over 55 years. Treatment advances result in excellent survival, yet older breast cancer survivors with co-morbidity may live longer, but not better after cancer. Decline in physical function, increased social isolation, and diminished economic resources increase vulnerability among older women. Rural women represent an underserved population. The purpose is to examine associations between comorbidity and predictors of health status among older rural breast cancer survivors. METHODS: Baseline data of 331 BCS age 55-90 years enrolled in the Rural Breast Cancer Survivors Study. Four surveys were used for data collection. Self-reported prescription medications were used as proxy for co-morbidity. Bivariate tests of association and multivariable recursive partitioning techniques were used for analysis. RESULTS: Mean number of prescription medication categories reported was 3.68 (SD = 2.3; range = 0-12). Common prescription categories were: anti-hormonal, anti-hypertensive, and cholesterol- reducing agents. 69% was overweight or obese. BMI >31 was significantly associated with both poorer physical and mental health. Multivariate analyses indicated physical health status was predicted by BMI, comorbid conditions, social support, and adverse changes in economic lifestyle. The same variables, with the exception of BMI, were predictors of mental health status. CONCLUSIONS: Assessing co-morbid conditions, mental health status, social support, and economic burden after breast cancer treatment may better inform cancer survivorship care and comprehensive geriatric assessment.

Predictors of attrition among rural breast cancer survivors.

Attrition can jeopardize both internal and external validity. The goal of this secondary analysis was to examine predictors of attrition using baseline data of 432 participants in the Rural Breast Cancer Survivors study. Attrition predictors were conceptualized based on demographic, social, cancer treatment, physical health, and mental health characteristics. Baseline measures were selected using this conceptualization. Bivariate tests of association, discrete-time Cox regression models and recursive partitioning techniques were used in analysis. Results showed that 100 participants (23%) dropped out by Month 12. Non-linear tree analyses showed that poor mental health and lack of health insurance were significant predictors of attrition. Findings contribute to future research efforts to reduce research attrition among rural underserved populations.

Strategies to retain rural breast cancer survivors in longitudinal research.

AIMS: To describe the retention of rural women in the Rural Breast Cancer Survivors (RBCS) Intervention. BACKGROUND: Few studies describe strategies and procedures for retention of participants enrolled in cancer research. Fewer studies focus on underserved rural cancer survivors. METHODS: A descriptive design was used. A conceptual model of retention based on three factors: researcher, participant, and context with primary, secondary, and tertiary strategies was used to unify the data. RESULTS: 432 women enrolled in the RBCS study, of which 332 (77%) were retained and completed the 12 month study. Favorable retention strategies included: run-in period, persistent attempts to re-contact hard to reach, recruitment and enrollment tracking database, and a trusting and supportive relationship with the research nurse. CONCLUSION: A conceptual model of retention with differential strategies can maintain participant retention in a longitudinal research study.

An application of longitudinal analysis with skewed outcomes.

BACKGROUND: Longitudinal designs are indispensable to the study of change in outcomes over time and have an important role in health, social, and behavioral sciences. However, these designs present statistical challenges particularly related to accounting for the variance and covariance of the repeated measurements on the same participants and to modeling outcomes that are not normally distributed. OBJECTIVES: The purpose of this study was to introduce a general methodology for longitudinal designs to address these statistical challenges and to present an example of an analysis conducted with data collected in a randomized clinical trial. In this example, the outcome of interest-monthly health-related out-of-pocket expenses incurred by breast cancer survivors-had a skewed distribution. METHODS: Common statistical approaches are for longitudinal analysis using linear and generalized linear mixed models are reviewed, and the discussed methods are applied to analyze monthly health-related out-of-pocket expenses. DISCUSSION: Although standard statistical software is available to conduct longitudinal analyses, training is necessary to understand and to take advantage of the various options available for model fitting. However, knowledge of the basics of the methodology allows assimilation and incorporation into practice of evidence from the numerous studies that use these designs.

The out of pocket cost of breast cancer survivors: a review.

INTRODUCTION: Out of pocket (OOP) costs add to the burden facing breast cancer survivors but remain an understudied area of costs. Current turbulent economic climate increases the urgency to better understand this burden. Few studies or systematic reviews focus on OOP costs. METHODS: PubMed search was conducted for articles in English containing: (1) MESH terms breast neoplasms and economics, and (2) words "breast cancer" and "cost" or "costs," "expenditure," or "out of pocket." Limits included: publication dates from January 1, 1980 to December 16, 2009, and populations aged > or = 45 years old. Articles were excluded based on title, abstract, and full text reviews. Citation searches and searches of reference lists were also conducted. Three articles were selected for this review. RESULTS: Medical direct OOP costs (e.g., for physician fees) ranged from $300 to $1,180 per month during active treatment, and were about $500 per month 1 year post diagnosis. Non-medical direct OOP costs (e.g., for transportation to doctor's office, parking etc.) ranged from $137 to $174 per month in the year post diagnosis; and $200-$509 per month 1 year or more after diagnosis. Different types of costs were identified. CONCLUSION: OOP costs represent a significant burden for survivors even after initial treatment. The nature and extent of OOP costs need further evaluation. IMPLICATIONS FOR CANCER SURVIVORS: OOP costs are rarely considered. However, as OOP costs affect the well being of cancer survivors, they should be understood more fully and possibly addressed in interventions aimed at improving quality of life.

Quality of life in cancer survivorship: 20 years later.

OBJECTIVES: To discuss the unique quality-of-life (QOL) issues for cancer survivors and provide guidance for the selection of measures to assess them. DATA SOURCES: Literature review, PubMed search, electronic data, websites. CONCLUSION: QOL is a vital outcome for cancer survivors. QOL measurement of the unique needs of cancer survivors has increased over the past 20 years. IMPLICATIONS FOR NURSING PRACTICE: Oncology nurses can move QOL science in cancer survivorship forward by using research findings to implement evidence-based practice.

Cognitive remediation therapies for older adults: implications for nursing practice and research.

Among older adults, 20%-56% report having cognitive problems, and such cognitive complaints frequently correspond to actual neuropsychological impairment. The loss of cognitive abilities can be frustrating and frightening and can have a negative impact on instrumental activities of daily living and quality of life. Cognitive remediation interventions have been shown to be successful in improving mental function in older adults in many situations and may increase the number of everyday activities they are able to carry out. Nurses, given their direct contact with older adult patients, are able to inquire about or observe cognitive loss, make appropriate referrals, and emphasize steps such as cognitive remediation and other interventions that promote successful cognitive aging.

Development and evaluation of home-based speed-of-processing training for older adults.

OBJECTIVES: To develop technical parameters for a videotape-based speed-of-processing training protocol, to evaluate the feasibility of self-administration (experiment 1), and to evaluate the protocol's effectiveness (experiment 2). DESIGN: A feasibility study (experiment 1) and a pre-post, 4-arm, nonrandomized controlled trial (experiment 2). SETTING: University research center. PARTICIPANTS: A population-based sample (37 men, 47 women; age range, 65-94y) (experiment 1). A population-based sample (age > or =65y) with no prior exposure to the Useful Field of View assessment or speed-of-processing training, no dementia or life-limiting illness, a Mini-Mental State Examination score of greater than 24, corrected far visual acuity of greater than or equal to 20/40, contrast sensitivity of greater than or equal to 1.50 log(10), and deficient processing speed (experiment 2). For experiment 2, 8 of 189 eligible people declined to participate. The final sample for this experiment included 100 men and 81 women (age range, 65-91y). INTERVENTIONS: Eight to ten 1-hour cognitive training sessions. MAIN OUTCOME MEASURE: Posttraining gains in processing speed. RESULTS: Self-administration was feasible. Subjects who underwent home-based training improved their processing speed significantly more than either control group (F(3,146)=16.16, P<.001). Their gains were 74% as great as the gains of those who underwent trainer-facilitated speed-of-processing training. CONCLUSIONS: People can improve their processing speed at home using readily available technology. Future research should explore the relation of these improvements to driving performance.